Two bills being promoted by the Outer Cape’s representatives in the Massachusetts legislature would expand minors’ access to medical care without the consent or knowledge of their parents. One concerns abortion and the other preventive medicine for HIV.
Cyr testified in support of the bill (S. 1237 and H. 1954) before the Joint Committee on Public Health at a hearing on Oct. 8.
“I have seen in my own life how PrEP has been a game-changer in the fight against HIV,” Cyr said at the hearing. “As someone who grew up in Provincetown in the 1980s and 1990s, when we lost so many to HIV, it’s personal to me. It is past time for our commonwealth to remove further barriers for access to PrEP.”
A 2018 Mass. Dept. of Public Health report found that people ages 13 to 24 years accounted for 15 percent of new HIV diagnoses from 2014 to 2016.
Dr. Kenneth Mayer, co-chair and medical research director at the Fenway Institute, told the Independent that Cyr’s bill is a step in the right direction. “I think it would be a tragedy for someone who’s 15 or 16 years old to become HIV-infected out of discomfort of their parents’ knowing,” he said.
Barriers to Access
Beyond consent, there are other obstacles to getting PrEP that Cyr’s proposed legislation does not address.
For one, PrEP is expensive. Without insurance, a full prescription costs about $1,500 a month.
The privacy of young people on their parents’ health insurance plans is protected by a bill signed into law by Gov. Charlie Baker in March 2018: if confidentiality is requested beforehand, medical decisions will not be disclosed on insurance forms.
For minors without insurance, finding the means to pay for PrEP is a challenge. But a recent federal program may address that need.
President Trump has promised to reduce new HIV infections by 90 percent by 2030. To reach this goal, the U.S. Dept. of Health and Human Services launched Ready, Set, PrEP on Dec. 3. The program will provide PrEP for free to about 200,000 people who do not have HIV but are at risk for exposure and are not currently insured. The program will run for the next 11 years, CNN recently reported.
Ready, Set, PrEP will be open to minors if they meet the program’s requirements, Mayer said.
Another barrier to accessing PrEP is homophobia. Cultural taboos surrounding casual gay sex have prompted some to argue that PrEP would encourage risky behavior. A recent study found that “slut-shaming” has prevented quick uptake of the life-saving medication.
Doctors can be part of the problem as well, telling patients to refrain from sex instead of taking PrEP.
“Physicians are members of society,” Mayer said. “Sometimes they will conflate personal religious beliefs with their professional role.”
The best under-18 candidates for PrEP would be teens who are already sexually active, are committed to adhering to the schedule of a daily dose, and are aware of PrEP’s limitations, Mayer said. PrEP does not protect against other sexually transmitted infections, such as chlamydia and gonorrhea.
Expanding Abortion Access
The other bill being debated in the state house (H. 1630), which Rep. Sarah Peake has signed on to support, seeks to remedy inadequacies in Massachusetts law concerning young women’s access to abortion. Currently, minors must get either parental consent or a judge’s approval to receive an abortion.
Peake told the Independent in an email that the proposed bill is important for several reasons.
First, it would eliminate inconsistencies. Peake said that although a young woman cannot access abortion without an adult’s approval, she can make all the health-care decisions for her child after it is born.
Second, “Going before a judge takes time and courage,” Peake said. “It delays procedures, often making them unnecessarily more complicated and invasive. All this is a delay tactic that further traumatizes the young woman.”
Peake also pointed out that obtaining a judge’s approval does not guarantee follow-up through counseling or social work. Underlying issues remain unaddressed.
Decision-Making and the Family
By leaving medical decisions to doctors and their younger patients, both bills raise questions about when these decisions should be made, and how much say parents should have.
Brian Earp, who is the associate director of the Yale-Hastings Program in Ethics and Health Policy at Yale University, researches bioethics and family medicine. He told the Independent that children should gain autonomy in steps as they grow up.
“The ability to make decisions doesn’t turn on like a light switch at 18 — children are always learning and developing these capacities and practicing decision-making,” Earp said. By the age of 10, for example, a child can decide whether she wants to have braces or her ears pierced.
Earp said that children’s ability to make decisions is based on their ability to understand the long-term consequences and risks. As kids grow up, their increasing ability to give consent should be reflected in their legal rights.
Earp thinks that taking medical decisions outside of the private sphere is important for public health. Protections for children within families, where they have little ability to advocate for themselves, are often weak and slow to be implemented.
“If you leave everything to the family unit, a place of privacy, then you also leave in place structural components that systematically disadvantage children,” said Earp. “Law and policy have a role to play in terms of giving children more of a platform and a voice.”